Saturday, February 02, 2008

My Sky

Sky haven fun with his ABC car.

Silly string hair!!!

Sky reading his Spongebob book.

Ok I know he is 2 and a half, but I can not get over how precious he is...
And how peaceful he looks while sleeping.
Ok I have to do some bragging, Skylar is so smart. He amazes me each and every day, we can now count to 15, he knows all of his shapes, colors, and about 10 different animals sounds. He has his ABC's down, but does them best with letter-picture association. He is a great problem solver. He loves his V-smile, and I must say its been the best thing Ive bought him, he is mastering games made for 5 and 8 year olds. He still only talks when he wants, but when he does, wow will he blow you away. We have learned a few new tricks that have been a little hard to master given his SMA, but we now do thumbs up and guns (soo cute). I am working with our ped and neurologist on getting him on VPA. Its a trial drug that has done wonders for the SMA kids I know on it. So I hope and pray this will happen. Basically the VPA has been proven to help SMA kids produce the depleted protein, increasing there strength. I know of one TY II that was only able to sit, and he has been on the VPA for a few months and his mom just posted a video of him walking (on his own) made me cry, as I know first hand how she must have felt to see such a wonderful thing, and too see the pride and excitement on his little face. So maybe with the grace of God and good faith, Skylar can have some wonderful turn arounds while on it too.




4 comments:

Izabell said...

we will be praying that he will first be able to have this medicine and also that it helps give him strength. amazing! He is so smart! ABc's, colors adn animals! Go sky!!! he is sooo smart! what is v smile? Izzy doesn't know her colors yet and when Steven was reading to her today I asked him to work on colors with her and he said no very sharply, he is colorblind I i forgot briefly! lol! He was a little defisive about it but after children's hospital and the color coded ICUs I don't blame him for being sensitive about color! lol Skylar has Steven beat for colors and he is 38:) Go skylar go:) Hope Steven doesn't read this:) haha!

Izabell said...

i love the pictures and have been checking often to see a new one of him! i love the sleeping ones! Don't they look so peaceful adn I love listening to Izzy's breaths while sleeping I could not imagine her in her own room and not being able hear those soft breaths, too used to listening for the pulseox I guess! Sir Snores-alot on the other hand could sleep in another room sometimes:) jk ( I really do love my husband I promise:)

Bug said...

Type Vsmile into your search and you should see them, its a game system for little kids ages 2 to like 8. There are lots of fun games that teach so many things, Sky loves Dora fix t adventure and Go Diego Go, oh what am I saying, he really loves all of his games and I think he has 8 diffrent ones right now, pluse they have an art studio. Hugs to izzy :)

hjoy said...

The pictures are precious, Sky has a beautiful smile. such a smart guy I am very impressed. My little one has cognitive delay is 9 and has only recently mastered his letters and some words.